I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

Connie Sherwood, CN from UC San Diego Medical Center
discusses how patients get their life back post PTE
surgery.

My name is Connie Sherwood, and I work at UCSD Medical Center on
the fourth floor.

So, we see PTE patients prior to surgery and then after they
move to ICU, so we kind of have an opportunity to get to know our
patients a little bit, and it's sort of an exciting process,
because we get to see them beforehand. Oftentimes, they're walking
in sick, on oxygen. Their lives have been altered for such a long
time. It took a long time to get diagnosed.

So probably, it's one of the most exciting surgeries that I see.
We see a lot of heart surgeries, but this one is curative. So, we
get to see the patients' lives back, because patients feel like
they're getting their lives back. A lot of them have spent time
gradually losing quality of life, and so they may not have it right
away after surgery, because they're still healing. But the quality
of life already begins from the time they start rehabbing on our
floor. So, by the time they leave, oftentimes, there's no oxygen.
And they're walking the floors, tiring the nurses out with how many
laps they can do, whereas when they came in, some of them come in
in a wheelchair, because they can't walk from the parking lot to
the floor. So, it's definitely exciting to see.

We have patients from all over the world, so it's exciting to
get to see even different cultures and how the disease has affected
them throughout the span of it, too. A lot of times, they don't
even know why they have it. A lot of times, it's taken so long to
diagnose, maybe they've been told they've had asthma for years and
tried inhalers, tried many different treatments, which none work,
because it's not going to reach the disease that's happening in the
lungs.

The clots that sometimes will start with a deep vein thrombosis
or a pulmonary embolism that becomes chronic and gradually alters
their life. So, when they come into our place, they're so excited
to finally have some answers and hope for treatment. We see all
different ranges. We don't see a lot of pediatric patients on our
floor. We don't treat pediatric patients, but we'll see 18 year
olds on up to 70, 80 years old. So, all different ages.

There's so many different hospitals out there that aren't aware
of this disease, so like I said, the diagnosis sometimes takes a
long time. If the doctor knows what's going on and diagnoses them
quick, then we'll see patients within months of their diagnosis,
whereas it's kind of a funny question, because I always ask people
when they come in, "How long has it been since you've been dealing
with it?" Or "How long have you been waiting?" And many of them
will say 2, 3 years and finally got diagnosed, and then two months
and we're here. So, it varies greatly.

It's also really fun to see the patients that come in that have
had V/Q scans, echoes, CT scans finally get diagnosed. And then, at
the end of the treatment, after the surgery, they redo all of those
tests, and they get to compare between the beginning to the end and
just see the great results that we see. Well, the V/Q scan will
show the profusion of the lung, and in the beginning, before they
are treated, they can see that there's lack of profusion all
throughout the lung. After surgery, they're still in the healing
process, but you'll definitely see more profusion through the lung,
and less signs and symptoms of dyspnea, especially with
exertion.

I think that we're cutting edge. We're the best, so I'm proud to
be part of that, even if it's just caring for the patients before
and after. But it's pretty exciting to see what our doctors are
doing, what our surgeons are doing and the type of care that the
patients receive when they come to UCSD. We definitely get patients
from all over the world, so many times, they don't come back here
to be followed up on. But our amazing team will make sure that they
have follow up where they're going back to after they get home.
We've had patients from Saudi Arabia, from Brazil, from all over
the world. So of course, once they go home, they usually just
follow up with their own doctors.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global